Partner needs mental health help, where and how?

June 25, 2021 2:03 PM

Adult can't live on their own; I can't care for them. Help

My partner and I are middle aged people. For a while, I've been the breadwinner, they have kept house. It's worked for both of us. Sadly for the last few years I've been dealing with a very serious and possibly fatal disease. I may or may not be around awhile. I'm in experimental treatment.

Also sadly, since the pandemic started, Partner has been sinking into deeper and deeper depression and has started to become increasingly forgetful, and unable to do complex and now simple tasks. Partner gets disoriented and is down to only perform their basic washing/dressing. They can no longer use appliances as they get confused in the middle of doing laundry or loading the dishwasher, etc. They have trouble reading.

Problem is they have no other family and I'm not physically or mentally able to be their caregiver.
I don't know what to do. They are waiting for a neuropsych workup (still weeks away); MRI shows brain looks normal. Docs suspect this is mental/emotional not injury or disease.but they're moving slowly bc Partner isn't imminently in danger. But they won't tell me where or if f I can get help dealing with this.

What do I do on the meantime? They aren't an obvious danger to me or themselves but can't be alone either. I'm at the end of my rope because all my free time now is me helping them explain things when they get confused. I'm burnt out. Exhausted. What do I do? Where should partner go? We are in the USA, have good insurance but we're not wealthy.

Thanks for reading all this. Please help and please, please be kind in your responses.

posted by anonymous to Health & Fitness (22 answers total)

Take them to another doctor, ASAP. This does not sound likely to be "emotional/mental" or whatever synonym they're using for "all in your partner's head" at all. This sounds like some form of early dementia or brain cancer, or maybe some very slow poisoning. (Please note: I don't at all blame you for not realizing this. Of course you trust the doctor. But this is ridiculous!)

If your partner is taking any supplements or similar OTC medications/herbs/whatever that weren't specifically prescribed to them by an actual doctor, have them stop. Do they spend a lot of time anywhere that you don't, like an enclosed basement space, where they could be breathing in something deleterious?
posted by praemunire at 2:23 PM on June 25, 2021 [39 favorites]

I'm so sorry, this sounds horrible for both of you.

If this is mental/emotional, it seems like there is a decision tree to pursue, probably alongside the neuropsych workup. Starting with a psychiatrist and possibly a psychotherapist, since this has to be a horrendous experience for your partner to be going through. Depending on those outcomes and diagnoses, your partner might do well in an intensive outpatient program or a partial hospitalization program, which are different flavors of full- or part-day mental health programs.

In terms of your own self-care, is it possible to get out of the house? (If you're not, currently.) You might consider hiring someone to keep your partner company while you do, if that seems necessary. This sounds brutal for you as well and if you can do something gentle like sit in a shady park for a while each day, it might help you withstand this time and be more present for your partner.
posted by chesty_a_arthur at 2:27 PM on June 25, 2021 [1 favorite]

I’m so sorry, this sounds terribly stressful. Can you request to be assigned a social worker at the hospital where you get your treatments? If so, this is exactly the kind of thing those folks are supposed to help with.
posted by hurdy gurdy girl at 2:37 PM on June 25, 2021 [8 favorites]

I have never heard of "so confused they forgot how to use an appliance" as a sign of anything except something bad is physically happening to them. They don't need "care" (I mean, they do but,), they need a cure. Can you email the mods and ask them to post your location? That will be incredibly important for folks to find you some resources.

In the meantime can you afford to have housekeepers come in and take over their responsibilities for awhile. That's something you can do today.

I'm really sorry this is happening. I know how hard it is. It's really hard and it sucks. We are just internet strangers but your story touched me and I hope things get better.
posted by bleep at 2:39 PM on June 25, 2021 [22 favorites]

Oh and you should also check their oxygen levels and ask the drs to take a look at their lungs. I know someone who started to show symptoms of confusion and it turned out they were oxygen deficient. Also these could be symptoms of COVID.
posted by bleep at 2:40 PM on June 25, 2021 [5 favorites]

Jesus that sounds hard. Just echoing that anytime a doctor says that something is psychological it is worth getting another opinion and advocating hard for investigating physical possibilities. Is there someone else who could attend appointments with your partner who may have more capacity to advocate then you may at the moment? Not because you would not be a willing advocate because you have so much on your own plate. Wishing you all the very best.
posted by jeszac at 3:02 PM on June 25, 2021 [3 favorites]

They’re confused and not sullen. As in they forget how to use an appliance or they just forget to finish a task? Either way, that sounds extremely alarming and I think it’s important to make a doctors appointment ASAP and make sure you go with them so you can relay all of the information. Write everything down beforehand so you don’t forget any details when you’re at the doctors appointment. I’m wishing you all of the good luck and comfort I can send your way.
posted by Champagne Supernova at 3:06 PM on June 25, 2021 [4 favorites]

I am so sorry; it sounds like your partner is very ill indeed. These symptoms, especially without a long history of severe mental illness, are terrifying and nothing to be blase about.

(I hope if the doctors are so convinced of mental/emotional illness that they are coordinating referrals to a psychiatrist? If not, I hope someone kicks them hard in a soft place. I am so sorry they are not understanding the severity of this situation.)

It's a little unclear whether you are asking for other medical options to help your partner regain function or whether you are trying to explore caregiver options. If it's the latter, I agree that you should start with getting a social worker through your own hospital and explain the situation; they will have various paths for you to take and help you figure out how to get insurance coverage for part-time or full-time in-home care.

You might also try looking on forums for dementia/alzheimer's caregivers; a LOT of people are in your situation, they just have a diagnosis for it. They may be able to recommend search terms for the kind of care/help your partner needs.

In the immediate term, this is where you need to call on your friends. You say your partner has no family, but do you? Do you have that one super organized friend who would put together a meal train for you guys and coordinate some laundry pickups and such?

Your friends and family won't want you to do this alone but if they know about the situation, they may not know HOW to help. Don't be embarrassed to tell them. If you were my friend, I would be desperate to know that you needed dinners and laundry and someone to load the dishwasher.
posted by We put our faith in Blast Hardcheese at 3:08 PM on June 25, 2021 [12 favorites]

Get a cardiac workup, if at all possible. This sounds a lot like what would happen to some of my older relatives when they needed their heart medications changed and their brains were being deprived of oxygen. It could be something that has a relatively straightforward solution.

In the immediate future, could you hire someone to come in and help with the cooking/laundry? Or, as suggested above, recruit friends to help?

This is a hard, hard place to be and I wish you all the best.
posted by corey flood at 3:14 PM on June 25, 2021 [7 favorites]

Another physical possibility that fits your description of your partner is overactive parathyroid glands, which are easy for endocrinologists to diagnosis. The high probability demographic is being a female in her 50s or 60s. Parathyroids (not the same as your thyroid) can run amok and overproduce parathyroid hormone. That causes calcium to be leached from bones which, in turn, causes Vitamin D to go down. The excess calcium usually winds up in the kidneys, but it can settle in the brain. When that happens it causes heavy fatigue, memory issues and general brain fog. At peak problem I could no longer focus enough to read or operate appliances, forgot my phone number and once got lost in a parking lot. I thought I had early dementia. I had three (out of four) parathyroids removed and felt like the proverbial million bucks immediately. Within a few weeks I was my old self again: the experience was like an inverted Flowers for Algernon.
posted by carmicha at 3:18 PM on June 25, 2021 [29 favorites]

Oh gosh yes the parathyroid symptoms are very similar! And they can go undiagnosed for years.
posted by We put our faith in Blast Hardcheese at 3:59 PM on June 25, 2021 [3 favorites]

If you’re experiencing forgetfulness or confusion, check your medicine cabinet (AARP).
Your partner could be experiencing adverse drug reactions to an established or newer med, or from drug-drug interaction.
(Note - UTIs, yeast infections, vitamin/mineral deficiencies, and electrolyte imbalances can cause significant confusion, if your partner hasn't been checked for those.)
posted by Iris Gambol at 4:36 PM on June 25, 2021 [4 favorites]

Acute kidney injury could cause this too… lots of things could. 2nd finding a more active doctor. If your partner’s a woman, her concerns are likely to be dismissed, an engaged doctor is essential.
posted by cotton dress sock at 4:37 PM on June 25, 2021 [8 favorites]

I don’t want to be harsh or alarming but “Disoriented” does mean they are a danger to you and to self. Doesn’t matter whether that’s caused by a physical or mental condition. What if you have a medical emergency and they can’t get you your meds, call 911, etc.? What if they get so confused running the bath they drown?

I would get an appointment or even walk into the damn urgent care citing “confusion” and “disorientation” “not functional.”
posted by kapers at 5:08 PM on June 25, 2021 [6 favorites]

Just seconding that you should see another doctor and probably be a lot more insistent that this is rapid-onset and a dramatic change in personality.

If your partner has (or had up to some point) a uterus/ovaries and had a gynecologist they saw on some kind of regular basis - so they could be seen by someone with a more complete medical history - I would try to get in there, as (sometimes) those doctors are less inclined to handwave this kind of thing off as hysteria and are more familiar than a GP, I find, with the often non-textbook presentations of thyroid and other endocrine changes. Another specialty you might look at is internal medicine, you may find that approach more helpful as a starting point before referrals to specialists.

I would encourage you to prepare documentation for the next doctor you have a conversation with, and include these examples if you have been softballing it previously or trying to let your partner explain the problem. Be as detailed as you can, such as "they can no longer complete a load of laundry without my intervention to explain how to finish (ie it's not that they can't lift it or are too tired, they can't understand the equipment/recall the next steps); this was a task they performed x times a week as recently as MM/YYYY".

Like, try to paint a before/after in bullet points, and try to remember anything you can about the period of time just before you really started noticing something was off - did they get sick (particularly a nasty bout of "food poisoning" or gastro or "flu", or something that in retrospect might have been COVID), bump their head in a way that seemed nbd at the time, migraine, strange rash, something like that.

For a short-term break and assistance, maybe you could find someone on care.com to come in and assist your partner with some basic daily tasks but also have a healthcare background to help you articulate the extent of the problem and navigate the healthcare system with better ammunition.

While people fall apart in all kinds of different ways, it's just very hard for me to believe that someone - even if they were fragile beforehand - would become consistently and long-term unable to perform the tasks of daily living just from stress and depression. Not in a way that is confused. Confusion is a terrifying red flag here. And in middle aged people - even young middle age like 40s and 50s - sometimes all it takes is a silent UTI or mild change in kidney function or a slow bowel obstruction to suffer cognitive decline serious enough to make daily living tasks more or less unmanageable.

Like kapers, I am inclined to say you have been run around so badly (with enough of your own stuff going on) that I'd be tempted to say go to urgent care too and ask a) for bloodwork for anything that might create this kind of confusion b) referral to somebody who can help, like maybe just talking face to face to a doctor whose job is often pointing people at the proper channels might be a key of some sort. I worry that you/your partner might be marginalized people or in some other way prone to medical prejudice, or that you are maybe a person who is not particularly dramatic and your demeanor is underplaying your concern.

It does kind of sound like you are so overwhelmed with your own situation that this has been frog-boiling you both for something like 18 months, which is longer than it should have gone without intervention and escalation, but that's in the past and you just need to be more urgent now.

I don't know what you do if it turns out she's very sick. Ideally once you get moving on a diagnosis you will intersect with a social worker who can help you navigate the systems that exist for this.
posted by Lyn Never at 5:21 PM on June 25, 2021 [11 favorites]

Adult day care is a thing. It can give you some respite to take care of yourself.
posted by metasarah at 6:21 PM on June 25, 2021 [2 favorites]

All of the above answers are good. Please, go to another doctor, possibly urgent care, ASAP. Use the key words kapers and Lyn Never suggested. Make it very clear that things are deteriorating, that this is a new change, and they are unable to support themselves. If they are at the point where you are having to spend a lot of time just helping them around the house, they may actually be a danger to you or themselves, and definitely need professional help.

You say they don't have family, but do you both have a network of friends you can lean on? Is there anyone else that knows the whole of what's going on? Can someone come with you to the hospital to advocate for both of you and help you get organised? If it turns out this is a long term condition for your partner, you may need to enter into a social care system and having someone else there to help fill out paperwork, make phone calls, etc might be useful to just get things set up.

In terms of your own mental health, I would also recommend reaching out to friends if you can, or if your disease has a network for people living with it, make use of that. It's easy to assume that you don't need it or to fall prey to pride in these cases -- which is totally understandable, most of us like to hold on to being self-reliant for as long as we can -- but you also deserve to feel comfortable and to be taken care of so you can concentrate on getting through things. Please, reach out to whoever you can. And if there isn't anyone you can think of, IRL on Metafilter might turn up a couple of helpful Mefites who may be willing to drive you to urgent care and help out for a little while until you're settled. You don't need to struggle alone, we're all here with you.
posted by fight or flight at 5:23 AM on June 26, 2021 [3 favorites]

You may be able to get an assessment for home based community services, also abbreviated as HBCS or waiver services (if connected to medicaid). In some states HBCS income limits are not connected to medicaid income eligibility and are higher. You should be able to Google income limits in your state. How it works in IL is that the HBCS assessor does an assessment and determines level of need of services (and assigns a dollar amount per month they are willing to pay) and then services can begin. You can self refer. Depending on the state, and the HBCS that they qualify for this is a longer term process, but something you can do from home.

People do show up with the assistance of family in the ER for this type of cognative decline, and first there is definately a medical work up before getting pysch involved. To me this sounds more medical than psychiatric unfortunately. Unable to care for self is a qualifier for inpatient psych admission if needed, but a full medical work up should be completed first.

Of you chose tge ER go with, be clear that he's unable to communicate his problems and that you need to speak to the doctor. Use words like disorientation, unable to care for self, unable to complete tasks of daily living, as above rapid onset is a great term, just be clear that you mean that a year ago he could do x and now he can only do y and not rapid onset like 12 hours ago, as the latter will get an immidiate stroke work up which isn't exactly what you are looking for.

If you cannot take care of him RIGHT NOW, say so. Be very clear that without additional supports there is no way for you to take him home. If someone asks you to take him home say no. This should help you get some referrals and assistance from a social worker and lead to a hospital admission. This is a last step, but it isn't uncommon in these types of situations for family to force the hospital to admit by basically disapearing because they simply just can't when outpatient doctors aren't helpful. It's not the recommended way by any means, but it it's a last resort method I've seen more than once.

For a guide to communication with physicians here (pdf) is a short checklist of basic activities of daily living and you can easily rank your partner to communicate with others what he can and cannot do without assistance right now. I'd suggest notating on your own what kind of assistance you are providing.

Also, note prompting to complete tasks is assistance as well. So if he won't change clothes without prompting, he does need minimal assistance with dressing.
posted by AlexiaSky at 6:16 AM on June 26, 2021 [4 favorites]

These answers suggest many possible medical explanations but don't address what I percieve your question to be.

Whatever the cause, including severe depression which may be most likely, your partner needs care and you can't provide it. Assuming you live in US where safety net is so poor, I suggest prioritizing your social supports. Are there friends who can sit down w the two of you and help form a plan? Are there support groups in your area for people with chronic illness, for caregivers, for people who share any of either of your identities? Do you have access to a medical social worker through your own healthcare who you could make an appointment with, and brainstorm community resources? Is there any kind of mental health mutual aid group or network?

This is a lot. Plugging for you.
posted by latkes at 10:16 AM on June 26, 2021 [3 favorites]

Strongly advocating getting a social worker involved—these are exactly the kinds of situations we are trained to help deal with. A local social worker should know the resources in your area to tap into. Is there someone available through your experimental treatment?
posted by epj at 12:15 PM on June 26, 2021 [1 favorite]

Just in case it was not clear from my other post (which was long!) If this is a psychiatric issue, they could qualify for inpatient care on a behavioral health unit because inability to take care of self is one of the big three reasons to hospitalized. (1. Suicidal ideation 2. Homicidal ideation and 3. inability to care for self). Some doctors really ignore the third critieria, but it is one and can be utilized if need be. (All psychiatric admissions should only be done after a full medical work up) . The fastest way is through an ER, but if you wanted to reach out to a particular behavioral health unit and speak to their admissions you could do so.
posted by AlexiaSky at 1:34 PM on June 26, 2021 [1 favorite]

In my comment about hyperparathyroidism I emphasized that most patients are women. I should have added that men can also suffer from this endocrine issue. Here's an article by James Fallows in which he discusses his own experience. Fallows was prompted to share his diagnosis by Garry Shandling's death, which was attributed to hyperparathyroidism. Elsewhere I've read that in Shandling's case the excess calcium settled in his heart, ultimately leading to its failure.
posted by carmicha at 7:48 AM on June 27, 2021 [1 favorite]